Presentation at the Symposium, "The Next Four Years, the Biotech Agenda, the Human Future: What Direction for Liberals and Progressives?"by Dorothy RobertsDecember 9th, 2004

Dorothy Roberts

Perhaps the greatest danger posed by the biotech agenda is its power to intensify racial injustice in America. Not only are human biotechnologies being employed within a racist social order, but they are already reinforcing the myth that race is a genetic trait and impeding efforts to tackle the social causes of racial inequality. Remember, justifying racial inequities in biological terms rather than in terms of white political privilege has profoundly shaped science in America for three centuries, beginning with the scientific defense of slavery. This basic explanation of racial difference rooted in biology rather than power still operates today - in fact it is making a spectacular come back -- and threatens to shape every aspect of the biotechnological future. I want to focus on two examples of how racism operates within the biotech agenda in ways that are antithetical to progressive and feminist values -- reprogenetic technologies and race-based pharmaceuticals.

Reproductive technologies like in vitro fertilization, along with new advances like preimplantation diagnosis and sperm sorting for sex selection, now assist people to have children who not only are genetically related to them but who are genetically advantaged.

Reprogenetics intensifies a dual system of reproduction in which primarily whites benefit from technologies enabling them to bear the children they want while minority and immigrant women are the primary subjects of welfare reform and other measures aimed at limiting their childbearing. The public begrudges welfare mothers a meager increase in benefits for one more child, but celebrates the birth of high tech sextuplets that require a fortune in publicly-supported hospital care. Poor and minority women have little access to reprogenetic technologies and the images promoting these technologies are almost always of white people. The answer isn't to expand their use. First, it's unlikely that in an era of welfare reform and cut backs, there will be much political support for state subsidies for reprogenetics. Will legislators who passed laws imposing so-called family caps on welfare benefits aimed at deterring recipients from having more children have much interest in proposals to pay for their access to expensive, high tech reprogenetic procedures?

More fundamentally, the unchecked expansion of reprogenetics is anti-progressive. It inscribes the perceived social advantage of having or not having certain abilities or traits associated with genes. Selecting children's abilities, sex, or race reflects the social advantages and disadvantages connected to these categories and can reinforce an unjust value system that privileges some over others. What's more, market driven increases in reproductive genetics without regulation can restrict freedom, not increase it. It is simply not true that just because something is more technologically advanced it is more liberating. Sickle cell screening in the 1970s served the discriminatory ends of insurance companies and employers rather than black people who carried the trait or had the disease. There's also the concern that minority women's eggs, that aren't desirable to most white couples for reproductive purposes where race matters a lot, will be purchased on the cheap for stem cell research.

But it's a mistake to think that these technologies are inherently liberating even for the privileged women who can afford them. Reprogenetics has generated greater surveillance of women who are the ones primarily responsible for making the "right" genetic decisions. Genetic screening programs, even if they are supposed to be voluntary, create the expectation that women will act on the results. Communities can put pressure on parents, especially mothers, to produce perfect babies for the sake of the whole. It's increasingly routine for pregnant women to get prenatal diagnoses for certain genetic conditions, such as Down Syndrome. Premarital genetic has become a duty, not a choice, in some communities. The reprogenetics industry is another form of privatization - the hallmark of the neoliberal state -- that makes the individual the site of surveillance through a subtly compelled self regulation of genetic risk.

Moreover, placing the responsibility for ending health disparities on individual reproductive decisions reduces a sense of societal obligation to address systemic inequities. Many disability rights activists argue that genetic testing privatizes disability because the availability of prenatal diagnosis for a disorder may discourage government funding for research and social services for people who have the disorder. The reliance on reprogenetics to fix disability and disease goes hand-in-hand with the demise of the welfare state and support for other private remedies for poverty. The proliferation of new genetic technologies is inversely related to access to general health care.

Some argue that it's a matter of reproductive choice for women to be able to select the traits of their children, including sex and other qualities unrelated to health. They dismiss concerns about the implications for women, the disabled, and racial minorities as threats to reproductive freedom. If we insist on social justice as the center of reproductive rights activism, we won't let eugenics infiltrate the women's reproductive rights movement as it did in the 1920s and 30s.

Race-Based Pharmaceuticals

The FDA recently approved the first raced-based drug, BiDil, to treat heart failure specifically in African Americans. The theory behind BiDil is that the reason for higher mortality rates among Black heart patients lies in biological or genetic differences among the races, either in the reason for getting heart disease or the reason for responding differently to medications for it. But there is a big difference between using race as a biological category to trace racial inequalities to genetic variation versus using race as a political category to address racial disparities that stem from social and economic causes. But America is taking precisely the wrong course. While conservatives and some liberals argue that it's time for a colorblind approach to social issues, ignoring the continuing impact of racism, many genetic scientists, including the makers of BiDil, are promoting the idea that race really does have a scientific basis in biology. The idea behind race-based pharmaceuticals discounts the importance of environmental factors in explaining differences in black and white patients' experience of disease to market a technological fix based on supposed genetic difference.

Besides resuscitating the fallacy that biological races have any scientific validity, there are two other dangers in this kind of race-based genetic research. First, it diverts resources away from finding and addressing the socioeconomic causes of health disparities. I will wager any scientist here that after another decade of the most complex and well-financed research into the genetic basis of diseases, we will have to conclude that black people's health - indeed, everyone's -- would improve far more by universalizing health care, equalizing the education system, cleaning up the environment, and reducing poverty. The future of most black children hinges on the kind of society they are born into, not the genetic traits they are born with.

Why not pursue both scientific and social progress, full steam ahead?

This race-based research will affect the political will to engage in social change. As Troy Duster astutely observed in Backdoor to Eugenics, characterizing a disease as a "genetic disorder" directs us to address it through genetic screening, genetically tailored therapies, and technologies geared toward preventing the genetic problem, rather than getting rid of toxins in the environment, improving the diet, investigating the links between poverty and illness, and universalizing health care.

Second, although some see BiDil and drugs like it as improving medical care for Blacks, these pharmaceuticals can also serve as a perverse justification for denying better therapies to Blacks and other disadvantaged groups, while the reserving superior therapies are reserved for white patients explicitly on the basis of race. Consider how BiDil won FDA approval. As law professor Jonathan Kahn has chronicled, it was the FDA's initial denial of approval to BiDil as a race-less drug that led its creator to reconceptualize it as a drug for Blacks, which then enabled it not only to get the FDA's blessing, but also to raise venture capital, receive a lucrative patent, and launch a successful marketing campaign. [Jonathan Kahn, "How a Drug Becomes 'Ethnic': Law, Commerce, and the Production of Racial Categories in Medicine," Yale Journal of Health Law, Policy, and Ethics 4: 1-46 (2004)] Meanwhile BiDil became the solution to the finding that Blacks respond less well than whites to ACE inhibitors, which continue to be the therapy of choice for white patients. Government agencies that finance and approve these research projects should scrutinize claims that there is a biological basis for the racial categories they use.

Progressives must seek ways, either through regulation or education, to avoid the potential of reproductive genetics, race-based genetic medicine, and other links between race and the biotech agenda to reinscribe the genetic definition of race and the biological explanation of racial inequities. Collective struggles to redress the social reasons for infertility and poor health are impeded by the availability of technologies to the most privileged, who can turn to these fixes rather than working together for more broad-based solutions. We can't let biotech advances sidetrack movements for social change that are far more critical to racial justice than tinkering with our genes.